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Slightly off-topic, but it might be worth saying that this is a fallacy that's been hanging around for decades in organisations that can't be bothered to check. There is no national registration scheme for disabled people. There is a register for blind people, and a few local authorities operate...

This. I don't trust any health professional who doesn't grasp it very quickly. Why doesn't anyone in the health service understand that patient advocacy and support is the gap that needs plugging in chronic illness, not access to psychological services? In some specialisms this function is...

Yes, I'd prefer this. It's a shame that you can't just credit the vouchers to your Paypal account, which would mean you could spend them almost anywhere – but I suppose that might incur extra charges.

I just don't worry about it. If I'm still awake after a couple of hours, I get up and do something – pick up a book, put the World Service on, poddle out into the garden, eat a slice of toast, or whatever. When I feel I need to go back to bed, I do. I know I'll sleep at some stage, even if my...

I've been doing this one since April. I've found the central contact team a bit hit and miss, but once you're actually allocated your health professional, it's much more reliable. My nurse lives near me, so she always does my test first. She'll ring on Mondays at around 8:00am to check I'm...

Babesiosis case identified in the UK Thought this might be of interest to UK folk who live in or visit rural areas where ticks are common: https://www.bbc.co.uk/news/health-53613459 "People are being urged to be on alert for tick bites, following the diagnosis for the first time in England of...

I agree, once the design assets are ready, it will be easier to circulate the news outside of social media or personal contacts. In situations where I can't just forward a digital link, I don't want to use my own wording – it has to be considered so carefully, and I think it would be better to...

This is the only type of PEM sweating I get. Exactly the same – head, neck, chest, and upper back, but completely dry from the armpits downwards. The sheets and pillowslips can be soaked through.

I think this is the assumption I'd prefer until we know more. ME may be a type of post-viral syndrome that does not resolve; it also appears to have non-viral triggers, although we can't be sure there are cases where no virus is involved due to the possibility of asymptomatic or latent viral...

Having worked with small trusts and foundations in a different field, a lot of them prefer to develop ongoing relationships with one or two organisations rather than churn out large numbers of small grants. It helps them get value and impact for their investment, and as a lot of them don't have...

Tsk, tsk – you're not supposed to ask questions about observational studies done as part of a marketing campaign. The correct response is, "Ooh, I definitely need a bit more vigour, I'll give that a try!". Followed by reaching for your wallet...

I'd really love to see a TV or radio programme with strong input from a female contributor (given that women are most likely to be labelled hysterical), based on the issues in this excellent article. I don't think it's too niche a discussion to be of general interest, as the fallout from...

It seems to be saying that it begins as 'simple' deficiency due to use of highly effective sunscreens and the predominance of indoor activities, and this is the point at which it needs to be addressed. Once ME kicks in it may become Vitamin D resistance, and supplementing may not be enough to...

Sigh. Who's volunteering to explain that 'highly protective sunscreen' didn't exist in the 1960s and 70s, and the redheads among us have the skin cancers to prove it? And that vitamin D deficiency is a bit unlikely in people who'd spent every possible moment mucking about outdoors as kids, and...

I wonder if 'embarrassed' is a polite word for 'absolutely bloody furious'?

Indeed – there's also the possibility that it starts as a low level post-viral syndrome in some, which is why I'm so concerned about post-Covid patients being given pacing advice from the outset. I don't know whether there is ever a possibility of full recovery in people who appear to develop ME...

My onset was quite gradual too, though it took me a bit longer to discover ME (23 years!). I'd never heard of it until a GP at my practice suggested it. I'd had several sudden remissions during that time, leading to 80 to 90% of function returning. Each time I started really struggling again...

An argument that I think still has a lot going for it, as long as people are given appropriate pacing advice from Day 1 and understand that it's not a fixed marker. Self-limiting PVS may go on for a year or more in some cases, and by the same token, severe and unrelenting ME symptoms can become...

I do know some, but one in particular got glandular fever in her late 40s. After seven months she was referred to a CFS service, as she just wasn't recovering. She went for one appointment, where she was given a CFS diagnosis; having known me for several years and learned a bit about the NHS...

And indeed, 'cause' is distinct from 'trigger'. Arguably we still don't know the biological cause of the symptoms, even though a proportion of us can identify one or more likely triggers [edited to add] for our ME.